Perception and attitudes towards epilepsy: point of view of professionals allied to medicine from Mobile Emergency Service in Campinas / Percepção e atitudes sobre a epilepsia: ponto de vista dos profissionais de saúde do Serviço de Atendimento Móvel de Urgência em Campinas

INTRODUCTION: Epilepsy is very prevalent in our society, but unfortunately lack of knowledge is still very common, contributing to psycho-social difficulties to people with epilepsy. PURPOSE: The aim of this study was to assess the epilepsy' perception and attitudes by professionals of emergency medical service in Campinas, Brazil. MATERIAL AND METHODS: This study was carried out with professionals of SAMU-192, who participated on the VII Stroke Workshop of Campinas in November 2007. RESULTS: One hundred-forty nine (149) professionals answered the questionnaire (49 percent women, average age of 37 years, range from 21 to 59 year). Ninety (60 percent) were professionals allied to medicine (nurses, health auxiliary, dentists), six (4 percent) were physicians and 53 (36 percent) were other professions (secretary, driver). In overall, a great majority of the subjects had an appropriate knowledge regarding epilepsy. But, some beliefs are still present. In relation to epilepsy' perception, some wrong ideas appeared, as epilepsy is a contagious disease, people with epilepsy can not practice physical exercise or to work. Also, the doubts regarding pregnancy and treatment of epilepsy were observed. Regarding attitudes during an epileptic seizure, some inadequate attitudes appeared: to put something in patient's mouth, to restrict the patients' movements or give something strong to smell (alcohol or vinegar) in order to stop the seizure. CONCLUSION: In this context, it is necessary a continuous education programs to the allied health professionals to improve the perception and attitudes, bringing epilepsy out of the shadows.

INTRODUÇÃO: Epilepsia é uma condição muito comum em nossa sociedade, mas infelizmente ainda convive com lacunas no conhecimento, contribuindo para dificuldades no ajustamento psicossocial da pessoa com epilepsia. OBJETIVO: avaliar a percepção e as atitudes dos profissionais de saúde do SAMU-192 sobre a epilepsia. MATERIAL E MÉTODOS: este estudo foi realizado com profissionais que trabalham no SAMU-192 durante o VII Workshop AVC - Campinas realizado em novembro de 2007, no qual os participantes responderam a um questionário estruturado sobre epilepsia. RESULTADOS: Cento e quarenta e nove (149) pessoas responderam ao questionário (49,6 por cento do sexo feminino e idade média de 37 anos - IC=21-59 anos). Quanto às especialidades temos 90 (60,4 por cento) de profissionais de saúde em geral (enfermeiros, técnicos de enfermagem, dentistas), seis (4,0 por cento) de médicos e 53 (35,6 por cento) de outras profissões técnicas (auxiliares de secretaria, motoristas). No geral, a maioria das pessoas tem um conhecimento adequado sobre epilepsia. Porém, algumas crenças ainda estão presentes. No que se refere à percepção, idéias erradas apareceram, como epilepsia é uma doença contagiosa, pessoas com epilepsia não podem praticar esportes ou trabalhar. Além disso, dúvidas referentes à gestação e ao tratamento da epilepsia também foram observadas. Com relação às atitudes durante uma crise epiléptica, apareceram: colocar algum objeto na boca do paciente, restringir movimentos do paciente ou dar álcool para a pessoa cheirar para poder interromper a crise. CONCLUSÃO: Neste contexto, são necessários programas de treinamento continuado para profissionais da área da saúde para melhorar a percepção e as atitudes perante esta condição, tirando assim a epilepsia das sombras.

VI Semana Nacional de Conscientização da Epilepsia em Campinas / VI National Week of Epilepsy Awareness in Campinas

Apesar da epilepsia ser a condição neurológica grave mais comum existente no mundo, crenças e comportamentos inadequados ainda persistem. Para mudar esta perspectiva, o Projeto Demonstrativo da Campanha Global "Epilepsia fora das sombras" permitiu o engajamento das associações de epilepsia em nosso país, fortalecendo o Movimento Nacional de Epilepsia. Uma das atividades deste movimento é a realização da Semana Nacional de Conscientização de Epilepsia, que acontece todos os anos na semana do dia 09 de setembro, com o objetivo de conscientizar a sociedade sobre a epilepsia. A ASPE realiza esta Semana desde 2003 e os resultados trazem importante fortalecimento ao movimento nacional para tirar a epilepsia das sombras e melhorar a qualidade de vida das pessoas com epilepsia e suas famílias.

Epilepsy is a common neurological condition; however, it is still very frequent to observe myths and inadequate behaviors regarding epilepsy in our society. The National Demonstration Project "Epilepsy out of the shadows" brought important changes in our society through a national movement of epilepsy carried out by lay associations. The National Week of Epilepsy, on the September 9th is one the major national movements with purpose to promote epilepsy awareness within our society about epilepsy. ASPE, a non-governmental organization, participates actively in the movement since its origin in 2003. We believe that the results contribute to reinforce the national movement to bring epilepsy out of the shadows, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.

Stigma scale of epilepsy: the perception of epilepsy stigma in different cities in Brazil.

PURPOSE: To assess the perception of epilepsy stigma in different regions of Brazil. METHOD: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. RESULTS: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; São Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). CONCLUSION: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences.

Stigma scale of epilepsy: the perception of epilepsy stigma in different cities in Brazil / Percepção do estigma na epilepsia em diferentes cidades do Brasil

PURPOSE: To assess the perception of epilepsy stigma in different regions of Brazil. METHOD: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. RESULTS: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; São Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). CONCLUSION: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences.

OBJETIVO: Identificar a percepção do estigma na epilepsia em diferentes regiões do Brasil. MÉTODO: A Escala de Estigma na Epilepsia foi aplicada em 266 pessoas de quatro diferentes cidades do Brasil (Curitiba, São Paulo, Vila Velha e Ipatinga). Em todas as situações, as pessoas foram entrevistadas individualmente, sendo que as questões eram lidas para os sujeitos. As condições de aplicação foram as mesmas nas cidades e a aplicação durou aproximadamente 10 minutos. RESULTADOS: Foram aplicados 266 questionários em três diferentes cidades do Brasil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). A média do escore geral da EEE foi 49,7. Na avaliação das quatro cidades separadamente, houve diferença significativa entre elas: Vila Velha=42; Curitiba=49; São Paulo=52 e Ipatinga=54 (ANOVA [2,262]=3,82; p=0,01). CONCLUSÃO: Este estudo mostrou diferenças na percepção do estigma, de acordo com as diferenças culturais e regionais. Neste contexto, podemos falar de uma perspectiva cultural para o conceito de estigma, sendo influenciado pela região e pelo contexto no qual a pessoa está inserida. O entendimento deste processo do estigma é importante para se propor campanhas efetivas de intervenção no estigma da epilepsia, considerando as diferenças sociais e culturais.

V Semana Nacional de Conscientização da Epilepsia em Campinas / V National Week of Epilepsy Awareness in Campinas

Epilepsia é uma condição neurológica crônica prevalente e, apesar do tratamento adequado controlar aproximadamente 70 por cento dos casos, é muito comum, ainda nos dias de hoje, ouvirmos mitos e crenças sobre epilepsia. Para reverter esta situação, o Projeto Demonstrativo da Campanha Global " Epilepsia fora das sombras" , da OMS/ILAE/IBE, trouxe mudanças importantes em nossa sociedade, entre elas o engajamento das associações de epilepsia em nosso país. Uma das atividades deste movimento nacional é a realização da Semana Nacional de Conscientização de Epilepsia, que acontece todos os anos na semana do dia 09 de setembro. O objetivo é conscientizar a sociedade sobre a epilepsia e tentar lidar com o preconceito existente. A ASPE realiza esta Semana desde 2003 e os resultados trazem importante fortalecimento ao movimento nacional para tirar a epilepsia das sombras e melhorar a qualidade de vida das pessoas com epilepsia e suas famílias.

Epilepsy is a common neurological condition and 70 percent can achieve seizure control, however, it is still often to observe myths and beliefs regarding epilepsy in our society. The National Demonstration Project on Epilepsy part of WHO/ILAE/IBE Global Campaign Against Epilepsy in Brazil brought important changes in our society through a national movement of epilepsy carried out by lay associations. The National Week of Epilepsy, on the September 9th is one the major national movements with purpose to promote epilepsy awareness within our society and aiming to reduce prejudice associated with this condition. ASPE, a non-governmental organization, participates actively in the movement since its origin in 2003. We believe that the results contribute to reinforce the national movement to bring epilepsy out of the shadows, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.

Prejudice towards chronic diseases: comparison among epilepsy, AIDS and diabetes.

INTRODUCTION: Diseases have an additional negative meaning but with different magnitude. Epilepsy is considered a stigmatizing condition; however its magnitude is unknown in our society, a limited-resource country, as Brazil. PURPOSE: To compare the stigma perception of epilepsy to other two chronic conditions: AIDS and diabetes in the city of Campinas, Brazil. METHODS: We interviewed people in two situations: on the streets (145 randomly selected people) and during a Meeting of Epilepsy (86 people). We asked three questions "What score would you rate for the prejudice that general population has towards: epilepsy, AIDS and diabetes". The score ranges from 0 (no prejudice) to 10 (maximum prejudice), and was displayed to the interviewee in the format of a ruler. RESULTS: The median (upper and lower 95% confidence interval) prejudice score of lay people was 9 (7.8-8.6) for AIDS, 7 (6.1-7.0) for epilepsy and 2 (2.5-3.5) for diabetes. The median prejudice score of people with epilepsy and relatives was 9 (6.9-8.1) for AIDS, 7 (6.4-7.5) for epilepsy and 2.5 (2.9-4.2) for diabetes. DISCUSSION: There is a difference in the perception of prejudice towards people with chronic diseases; AIDS had the highest level of stigma and diabetes the lowest, and epilepsy was in the intermediate position but closer to AIDS.

[The second step in the construction of a stigma scale of epilepsy].

RATIONALE: The issue of stigmatization is one of the most common psychosocial problems faced by people with epilepsy. PURPOSE: A second step towards the development of a scale to measure epilepsy stigma. METHOD: We applied a closed questionnaire to 12 patients and 32 relatives from the Epilepsy Outpatient Clinic at the University Hospital of Campinas. RESULTS: The results are grouped in three main domains: medical, social and personal areas. Medical: the subjects did not know exactly what epilepsy is or how it is caused; nonetheless they know how to treat it. Social: the most important areas that people with epilepsy are discriminated are at work and social relationships. Patients also complained about their lack of freedom and limits on recreation activities. Personal Area: subjects apparently have the same feelings and thoughts about epilepsy and seizures. CONCLUSION: This study analyzed the most common aspects presented in the questionnaire to assess epilepsy stigma for the Brazilian culture which are the base to the elaboration of a stigma scale of epilepsy.

The second step in the construction of a stigma scale of epilepsy

INTRODUÇÃO: O estigma tem sido projetado como um dos problemas sociais mais comuns enfrentados por pessoas com epilepsia. OBJETIVO: Este estudo representa o segundo passo no desenvolvimento da escala para mensurar estigma na epilepsia. MÉTODO: O questionário foi aplicado em 12 pacientes e 32 familiares, entrevistados no Ambulatório de Epilepsia do Hospital das Clínicas, UNICAMP. RESULTADOS: Os resultados estão agrupados nas três principais áreas: médica, social e pessoal. Médica: os sujeitos mostraram não ter informação suficiente ou adequada sobre epilepsia e crises, o que não aconteceu com relação ao tratamento. Social: o trabalho e as relações sociais apareceram como os aspectos de maior discriminação na epilepsia. Os pacientes também ressaltaram a falta de liberdade e restrição de atividades de lazer como aspectos bastante prejudicados. Área pessoal: todos os sujeitos aparentemente têm os mesmos sentimentos e pensamentos sobre epilepsia e crises epilépticas. CONCLUSÃO: Este estudo analisou os aspectos mais comuns apresentados no questionário para avaliar o estigma na epilepsia na cultura brasileira, os quais serão a base da elaboração da escala de estigma na epilepsia.

Kids' perception about epilepsy.

PURPOSE: Epilepsy remains a stigmatized condition. Lack of information has been pointed to as a cause of the perpetuation of stigma. Our goal was to survey children's perception of epilepsy. METHODS: We used a questionnaire to determine if the children knew what epilepsy is and, if they did not know, what did they think epilepsy is. Twenty-nine children (15 girls; mean age 10 years, range 9-11 years) from a fourth-grade class of an elementary school in Campinas, Sao Paulo, Brazil, completed the questionnaires individually at the same time in the classroom. This took about 20 minutes. RESULTS: Only four children said they knew what epilepsy is: a disease of swallowing the tongue (3) and a disease that can kill (1). The perceptions of children who said they did not know what epilepsy is were: a disease that can kill, a disease of swallowing the tongue, a contagious disease, a serious illness, a head injury. Three children knew someone with epilepsy, and only two of them had said they knew what epilepsy is. CONCLUSION: The perceptions elicited from the children had a negative connotation; only one child mentioned a relationship between epilepsy and the brain. The spontaneous thoughts of children in this age group, without the contamination of political correctness, may reflect society's collective unconsciousness of the prejudice toward epilepsy and people with epilepsy and needs to be further investigated. Continuous, repetitive educational efforts are necessary in elementary school to change these negative perceptions of epilepsy in our society.

Daytime outpatient versus inpatient video-EEG monitoring for presurgical evaluation in temporal lobe epilepsy.

Video-EEG monitoring documentation of seizure localization is one of the most important aspects of a presurgical investigation in refractory temporal lobe epilepsy (TLE) patients. The objective of this study was to evaluate the efficacy of inpatient versus daytime outpatient telemetry. The authors evaluated prospectively 73 patients with medically intractable TLE. Ninety-one telemetry sessions were performed: 35 as inpatients and 56 as outpatients. Outpatient monitoring was performed in the EEG laboratory. They used 18-channel digital EEG. Medications were not changed in the outpatient group. For analysis of the data, time was counted in periods (12 hours = 1 period). Statistical analyses were performed using Student's t-test and the chi2 test. There were no differences between the two groups (outpatient versus inpatient) with respect to age and mean seizure frequency before monitoring, mean time to record the first seizure (1.1 versus 1.4 periods), mean number of seizures per period (0.6 for both groups), lateralization by interictal spiking (46% versus 57%), and lateralization by ictal EEG (59% versus 77%). Daytime outpatient video-EEG monitoring for presurgical evaluation is efficient and comparable with inpatient monitoring. Therefore, the improved cost benefit of outpatient monitoring may increase the access to surgery for individuals with intractable TLE.